What is the Gulf War Veterans' Illnesses Biorepository?
About 697,000 men and women served in the 1990-1991 Gulf War. Nearly 250,000 Veterans have come down with illnesses in the 20 years since returning from the Gulf. These illnesses, known collectively as Gulf War Veterans' Illnesses (GWVI), have affected Veterans with medically unexplained constant symptoms that can include tiredness, headaches, joint pain, indigestion, trouble sleeping, dizziness, breathing disorders, and memory problems. The exact cause of GWVI is not yet known. Researchers have been studying whether exposures to various hazards in the environment during their Gulf War service are related to these illnesses. The Department of Veteran Affairs (VA) is committed to research on disorders affecting Veterans of the 1990-91 Gulf War. To advance this important research effort, the VA has funded the Gulf War Veterans' Illnesses Biorepository (GWVIB). A biorepository is a human tissue bank that collects, processes, stores and gives out research specimens for future scientific studies.
Who can take part in this study?
The VA GWVIB is seeking Veterans from the 1990-1991 Gulf War who are interested in donating their brain and other body tissue after death for future research on the causes, progression and treatment of Gulf War Veterans' Illnesses. Research of this type must compare persons who are healthy with those who have health problems. As a result, Veterans who sign up for, or take part in, this biorepository will include Gulf War Veterans with symptoms and/or illnesses and those who do not have symptoms and/or illnesses. This is the first time that any study has tried to start a national biorepository for
Gulf War Veterans. So, we now do not know how many Gulf War Veterans will take part in the GWVIB. This study will find out how to best set up a Gulf War Veterans biorepository, and to see if there are enough Veterans who will volunteer to donate. Even if we are unable to collect enough tissue for research, the information that we collect may help us to better understand Gulf War Veterans' Illnesses.
What are the potential benefits of taking part?
We hope that you might think about such an important organ donation, but you are under no duty to do so. Your VA benefits and your VA health care cannot be influenced in any way by your saying yes or saying no to take part in this study. Your taking part in this study will not benefit you directly. However, your donation may help future efforts in Gulf War Veterans' Illnesses research. If you think that you might think about making this generous after-death organ donation, the following information will explain what is involved for you and your family. You may also download our informational brochure here.
What can I expect if I take part in this study?
To take part in this study, you will be asked to review and sign a consent form. In addition to your consent, we will also need the consent of your next-of-kin (e.g., spouse, child, sibling) because this person will need to confirm your decision to donate after your passing. After signing the consent, we will ask you to fill out a questionnaire about your health history. We will update this information every six months to a year by telephone, by mail or by having you fill out a survey on an Internet web site. The telephone call and questionnaire should each require around 30 minutes to complete. We will also look at your VA medical record (if you have one) to collect information about your health from time to time and add that information to the GWVIB database so that we can follow your health and care over time. This will not require any of your time. All your information that we collect will be labeled with a code that does not identify you directly.
The body tissue that you donate will be collected at the time of your death and will not require any surgery or collection procedures at this time. Upon death, we would make arrangements for the donation so that there will be no cost to your family. The procedure will be done professionally and with dignity at the closest VA Medical Center or by medical professionals at another facility if the VA facility is unable to perform this in a timely manner. An open casket viewing is possible after donation if that is your family's wish. If your next of kin requests it, a copy of the pathology report will be provided when it becomes available.
Thank you for thinking about this important issue. We have included some answers to frequently asked questions here.
We are always happy to answer any questions you or your family may have. During working hours, we can be reached at our toll free number: 1-855-561-7827.
More information about Gulf War Veterans' Illnesses and related VA benefits and programs can be found here.